How long will it take to recover after CAR-T therapy?
Your recovery from CAR T-cell therapy is unique. In general, it can take a few months to recover fully, but you will have follow-up appointments beyond this to check how you are doing.
If you’re still recovering after a few months, that’s OK. Some aspects of recovery, like fatigue, can take longer to recover from. Speak to your medical team if you are worried about any part of your recovery.
Everyone’s recovery is personal but always have hope and belief that you will eventually feel like you again.
Rachel, who had CAR T-cell therapy to treat triple-hit diffuse large B cell lymphoma
How long will I be in hospital for?
You will be monitored in hospital for about 10-14 days while you recover after your infusion.
You can be discharged if:
- you have recovered from any side effects
- are no further than a 1-2 hour drive from the hospital (in case you experience any side effects)
- you have someone to care for you at home.
If you do not meet the above criteria, you will stay in hospital for 28 days after your infusion.
Are there any side effects of CAR-T therapy?
After treatment, your medical team will monitor you closely because most side effects develop within the first few days – but some could occur up to eight weeks later.
Side effects will vary from person to person but may include the following:
Cytokine release syndrome (CRS)
When CAR T-cells enter your body, they can activate other cells in your immune system. Sometimes this signalling can cause an inflammatory response across the whole body, known as cytokine release syndrome (CRS).
Symptoms of CRS include:
- flu-like symptoms
- high fevers
- low blood pressure.
It can be tricky to determine whether you have an infection or CRS so you will likely be given antibiotics straight away.
In very extreme cases, it can be life-threatening and you may need to be looked after on an intensive care unit.
Neurological problems
When lots of CAR T-cells are activated, they can affect your nervous system. This is called immune effector-cell associated neurotoxicity syndrome (ICANS), or simply neurotoxicity.
Symptoms can vary from mild to severe. You might experience:
- tremors
- confusion
- difficulty speaking
- difficulty writing
- difficulty moving
- headaches
- dizziness.
The nurses looking after you are trained to carry out neurological screening assessments. They will ask you various questions every day and will also assess your handwriting.
This might feel worrying but remember: your nurses and doctors are trained to manage these side effects and can treat ICANS with medications, such as steroids, if needed. Speak to your medical team if you have any questions or worries about neurotoxicity.
Neurotoxicity generally occurs within the first 28 days after infusion. There is a small risk of this happening beyond 28 days – up to eight weeks – so you are not allowed to drive for eight weeks after infusion.
Tumour lysis syndrome
CAR-T therapy destroys lots of cancer cells quickly. This can release chemicals called uric acid, potassium and phosphate into your bloodstream. High levels of these chemicals can affect your kidneys. This is called tumour lysis syndrome and can be treated with fluids and medicine. Your medical team will test you regularly for this side effect.
Allergic reaction
You might have an allergic reaction to your CAR T-cells. Your nurse will give you medication before your infusion to prevent this but tell them straight away if you feel unwell.
Low B cell count
Current CAR T-cell therapies target cancerous B cells, but they may destroy healthy B cells as well. These cells are part of your immune system and help fight infections, which means after treatment you may be at risk of picking up an infection. It’s important you inform your medical team if you think you have an infection because you may need treatment for this.
Your medical team may decide to give you IVIGs (intravenous immunoglobulins) after your CAR T-cell therapy if they think you’re at risk.
Infections
You will be at a higher risk of infections after CAR-T therapy as your immune system might take a while to recover.
Some symptoms of infection include:
- a temperature of 38°C or above
- uncontrolled shivering
- a cough or chest pain
- shortness of breath or fatigue
- redness, pain or discharge around a Hickman, Central or PICC line or Port
- being sick or stomach pain
- pain when having a wee or your wee being smelly
- diarrhoea (runny poo) or blood in your poo
- generally feeling unwell.
If you keep getting infections (recurrent infection) then you may need a treatment called immunoglobulin infusions.
You will also be given anti-viral, anti-fungal, and anti-bacterial medications as part of your recovery to help prevent infections. You might have to take these medications for a few months until your immune system fully recovers. Read more about infections on our Dealing with infections webpage.
Important:
If you have been discharged from hospital and have any of these symptoms, or think you have an infection otherwise, call your medical team straight away. They will give you phone numbers before you are sent home, so remember to keep or save them somewhere safe.
Try to stay positive. I had many side effects and a difficult recovery but things will improve and I've now been in remission for 2.5 years.
Robert, who had CAR T-cell therapy to treat follicular lymphoma
Will I have more hospital appointments?
You will likely have an appointment with your CAR-T medical team 30 days after your infusion to check how your recovery is going. You might have a PET scan or bone marrow aspiration (BMA) to check your disease.
You will then be seen in the CAR-T clinic:
- three months after infusion where your team will check how you have responded to CAR-T therapy. Before this appointment you will have a:
- PET scan if you have lymphoma
- BMA if you have acute lymphoblastic leukaemia (ALL) - six months after infusion
- one year after infusion
- then once a year, every year.
The appointments you have after your CAR T-cell therapy may be a bit different to the list above. It will depend on your hospital, their guidelines, and your specific situation.
Remember:
If you start to feel unwell or are worried about your recovery in any way, call your medical team. It’s much better to check even if you are fine, so don’t take the risk. Your medical team will want to hear from you so don’t worry about bothering them.
I am now still in complete remission over 12 months later. I still get regular check-ups with my consultants to monitor my progress which is reassuring. CAR-T has given me another lease of life.
Gary, who had CAR T-cell therapy to treat non-Hodgkin lymphoma
How can I help my recovery?
Some things are outside your control during your CAR-T recovery, but it can help to have some focus and keep yourself motivated.
Here are some things you can do to help your recovery:
Eating and drinking well
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You might not have much of an appetite after CAR T-cell therapy. You might even feel sick. But eating and drinking well is important to support your body during its recovery.
Here are some tips:
- Try to eat a healthy, balanced diet. This will be the best for your body. But more importantly, eat what you fancy eating. It’s better to eat something than nothing at all. You can build up to eating healthily over time.
- Eat little and often. You might find it easier to eat smaller meals.
- Drink two to three litres of water a day, if you can. If you find water boring to drink, try flavoured water.
- Ask your medical team if you can drink alcohol as this could slow your recovery and affect medications you’re taking.
- Ask to speak to a dietician. Your medical team should be able to help you speak with a dietician who can help with your diet.
- Make sure you follow good food hygiene to protect you from infection. This includes:
- cleaning your kitchen surfaces before and after cooking
- washing your hands before and after cooking
- not eating food that is out of date
- washing fruit and salad before eating
- making sure meat, fish and eggs are cooked thoroughly before eating
- checking the restaurants and pubs you’re eating at have the best food hygiene rating
- checking places you get your takeaways from have the best food hygiene rating.
Read more about eating well during recovery for CAR-T on our Diet after a stem cell transplant webpage.
Building your fitness
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Keeping fit and building your energy levels can really help your physical and mental recovery, but it can be tough if you’re struggling with fatigue.
Here are some tips:
- Start small. Go for a short walk to the postbox. March on the spot while waiting for the kettle to boil. Once you have some more energy, choose the stairs instead of the escalator or lift.
- Set yourself achievable goals. Walk to the front gate and back one day, then walk to the end of the road and back the next.
- Ask family and friends to join you. Recovery can feel isolating, boring and exhausting. Company and encouragement will really help.
- Find your local parkrun . You can walk, run, or volunteer at your local 5km parkrun each Saturday. It can help with your fitness, routine, and your overall wellbeing during recovery. Check with your medical team first to make sure they are OK with potential infection risk.
- Find physical activity that suits you. It’s not all about cardio. Strength exercises are important too – including yoga and Pilates.
- Ask to speak with a physiotherapist. Your medical team should be able to help you speak with a physiotherapist who can help you fit exercise into your daily routine.
Read more about exercising during recovery on our Exercise and keeping active webpage.
Coping with fatigue
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Fatigue is common after CAR T-cell therapy. This isn’t just about feeling more tired. Being fatigued means feeling too exhausted to do normal day-to-day things. It can affect your daily routine as well as your mental health.
Here are some tips:
- Listen to your body. Pace yourself and only do what you can each day. Be patient and kind to yourself. Pushing yourself too hard will only slow your recovery.
- Identify the part of the day where you have the most energy. This is likely to be in the morning. Prioritise things you really want to do or achieve during that time. Make sure this includes fun things – not just admin or housework!
- Ask for help if you need it. People want to help, so let them.
- Stick to a sleep routine. Try and go to bed at the same time every night and do things that will help you get a good night’s sleep, including:
- reading
- having a bath
- not looking at screens
- avoiding sugar and caffeine.
Read more about coping with fatigue on our Managing fatigue webpage.
Looking after your mental health
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You will probably feel lots of emotions before, during and after your CAR T-cell therapy. You might feel:
- excited
- anxious
- confused
- angry
- lonely
- relieved.
You could feel these one after another, or all at once. It can feel exhausting and overwhelming, so it’s important to check in and care for yourself.
Make sure you let your medical team and loved ones know how you’re feeling. Or keep a journal. There will be support out there for you, and it’s much better to get your thoughts and feelings out.
Read our tips for looking after your mental health on our Preparing for CAR T-cell therapy webpage.
Spending time with friends and family
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Looking after your mental health and wellbeing after CAR T-cell therapy is just as important as looking after your physical health. You'll want to hang out with your friends and family as part of that, but you need to do this safely.
Here are some things to think about:
- Make sure friends and family know they cannot see you if they are unwell. Have a good chat with everyone before your treatment so they are aware of the risks.
- Try to avoid public transport and busy places for a few months after your CAR-T therapy.
- Wear a face covering if you do need to be in a busy public space.
- Spend time with people on video calls if you are too fatigued to go out, or others are unwell. It’s a nice alternative.
Getting your vaccinations
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Make sure you get your flu and COVID-19 vaccines after your CAR T-cell therapy. Anyone you live with should also get their vaccines to protect you best.
Your medical team should speak to you about getting the vaccines you need – including your childhood revaccinations - but make sure to bring it up if not.
Read more about COVID-19 vaccines on our Coronavirus (COVID-19) and your treatment webpage.
Protecting your skin
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Your skin will be more sensitive to the sun after CAR T-cell therapy. Make sure you use suncream (SPF 30 or higher) and protect your head and eyes with a hat and sunglasses.
Going on holiday
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You might want to go on holiday after your CAR-T therapy – you'll certainly deserve a break! There are no rules about going on holiday but talk to your medical team to check what they advise, especially about going abroad. You’ll need to make sure you have the necessary vaccinations and have good travel insurance.
Having sex
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You can have sex whenever you are ready to after your CAR-T therapy. You just need to make sure you are protecting yourself from infections.
Chat with your medical team to make sure you are protecting yourself in the best way, including using contraception.
You might struggle to have sex after CAR-T. You might not want to have sex (low sex drive), feel too fatigued, or be affected by changes in your body.
This can be a sensitive topic. You might feel embarrassed to bring it up with loved ones, let alone your medical team. You can read more information and support on our Sex and relationships webpage.
You have to give yourself time, you cannot rush it. Six months after my treatment and I am generally feeling back to normal but I still have days when I'm physically and/or emotionally exhausted. But they're few and far between and I recognise the symptoms and so take a day or two off. That usually puts me back on track.
Mary, who had CAR T-cell therapy to treat diffuse large B cell lymphoma (DLBCL)
When can I go back to work or school?
You will be able to return to work, school, college or university when you have recovered well. This will depend on your individual recovery and your circumstances, i.e. what kind of job you have. You might be able to return quicker if you:
- can work or study from home
- can work part-time
- have an office job, or a job where you are sitting or don’t have to interact in-person with others.
In general, you’ll be able to return six months after your CAR T-cell therapy. Chat with your medical team as they will be able to best advise you. They will be able to help you talk to your employer, too, if needed.
Read our information on Returning to work and Returning to education for more support.
Some days you feel almost fully recovered and it is tempting to do too much. You can pay for that in the following days. The recovery from CAR-T is a slow process, with ups and downs. Your family and friends need to understand that. That way they can stop you from overdoing it no matter how energetic you might be feeling.
Mark, who had CAR T-cell therapy to treat high grade non-Hodgkin lymphoma
Where can I find further information and support?
You can read more about CAR T-cell therapy, including from patients themselves, on the following websites:
This information was developed in partnership with Blood Cancer UK
Information published: 30/08/2024
Next review due: 30/08/2025